letter

In response to a request to repost the EndoMarch speech from March 2014 where I could not attend but posted the speech, here it is again
Endomarch Speech
“When I was diagnosed in 1969, I had pain and one hospitalization after another for 17 years – without a diagnosis. I did, however, experience multiple scoldings about pelvic exams ‘not really hurting’ as I tried to exit the exam table with the ratcheted speculum still in place and some psychological dismissal because after all, it’s ‘just her period.’
Today, 44 years later, instead of prompt diagnosis and prompt treatment, we see diagnostic delays averaging 9 years. Nine years of pain, psychological dismissal, and disregard of severe pelvic pain. We have not come very far at all.
Making things worse – some are advocating that we not treat “minimal” disease at all. After all, it’s minimal, right? **Any endometriosis lesion can cause significant inflammation of the lining of the pelvis (aka peritoneum). Try living with a couple grains of sand in your eye for a lifetime!** It is the same kind of inflammatory response. This kind of misogynist approach to endometriosis care is outrageous. It is steeped in “there is not enough money to treat all 180,000,000 women worldwide” for their endometriosis. “
Let me tell you – if 180 million men worldwide had unbearable pain during sex, bowel movements and exercise, and were offered as treatment feminizing hormones, surgical castration or pregnancy? It would be an international emergency to which we would transfer our combined defense budgets. We would not be having this misogynist conversation regarding ‘enough money.’
The peritoneum is the thin saran wrap-like lining of the pelvic cavity and the organs. Its role is primarily protective. If there is blunt abdominal trauma, infection, appendicitis, leaking organs it reacts swiftly and predictably. There is bloating, intense abdominal pain, nausea, paleness, restlessness, anxiety (oh, you recognize that, do you?); every medical and nursing student on the planet has been taught to recognize these symptoms and respond quickly. A differential diagnosis must be made promptly and the peritoneal quality pain treated with pain medication. In women with endometriosis, however, we can somehow dismiss the intensity of her pain with the assessment of, “oh, it’s just her period.” This is outrageous that we would ignore, either in an ER or in a private practice, peritoneal quality pain without treating it.
If as a caregiver, you do not have the skill or interest in excising endometriosis, at least treat the patient’s pain. It is as intense as appendicitis. I know – I have had both. Or better yet – refer the patient to someone who can remove disease effectively. On our endometriosis boards on Facebook and other forums, where thousands of desperate women with endometriosis gather, we have identified less than 100 gynecological surgeons out of 52,000 in the USA who treat disease effectively- and yet, most believe they can. Treating effectively means permanent relief of pain in one or two surgeries. This disconnect is a huge problem.
Drugs do not treat endometriosis, they alter the normal hormonal state the woman tries to live in. Once, when giving a lecture on modern concepts in endometriosis, I had two surgeons confront me during the intermission. They said surgery was not necessary, they were curing their patients with triple dose Danazol and then stormed from the room.
When the lecture resumed the crowd interrupted and wanted know what the surgeons said. I told them they were “curing” endometriosis with Danazol. I wondered aloud why they would think that. The nearly 100 women in the room shouted almost in unison, “Because we don’t go back!” So if caregivers are thinking they are helping their patients with medical therapy, perhaps they are not listening closely enough – or just maybe, their patients are simply not coming back to them.
In the 1980’s when I was managing the Endometriosis Treatment Program at St. Charles Medical Center in Bend Oregon, we saw patients from around the world. They were all multiple treatment failures, both surgical and medical. 75% of them had been dismissed as neurotic. All had active, painful endometriosis as determined by independent board certified pathologists. Today, still I hear from woman after woman who has been told she has no disease and to seek psychological help. Yet when we manage to get her into the hands of a doctor doing advanced excision, she has active endometriosis and experiences dramatic long lasting relief upon removal.
Women with endometriosis live lives of quiet desperation. They have learned to be quiet because most do not believe the quality and severity of their pain. Their support systems often abandon them because doctors could find nothing wrong. Yet they present with peritoneal signs and symptoms. Will we continue to turn a blind eye? Or can we have the necessary compassion for their plight? If we cannot surgically resolve their disease, could we consider referring them to someone who can? Or can we put them into a pain management program? They will not become addicted, they may become dependent, but at least they will be able to get up off the couch and put the heating pad away and resume living a life.
Endometriosis is not a terminal disease, but despair can be and has been among women with endometriosis. I know of many…a single one is simply too many.
What I believe we need are trained surgeons to surgically deal with lower stage disease everywhere, and referral centers for complex, deeply infiltrating disease. Hysterectomies do not cure endo, although there are thousands of us that were fooled into believing that. It is unacceptable to continue to expect these women to cope with peritoneal quality disease without help and without relief. We are either part of the problem or part of the solution. We cannot continue to ignore their plight. There is a significant body of data now showing that excision of endometriosis lesions restores lives. How long will we continue to ignore that?
One of my heroes is Sister Kenny, an Australian Nurse who developed physical therapy for the acute effects of polio. Her therapy and hot woolen packs prevented joint fusion and relieved pain. She was soundly trounced worldwide by orthopedic experts caring for polio patients for years. Gradually, there was recognition that she was right. When asked why she thought it took so long for others to see that suffering could be ended with simple changes in care, she responded:
“When we speak with the voice of authority, we come to believe we are the authority.”
When I read that, I thought, yes, despite evidence to the contrary. Well, there is evidence, plenty of it, that skilled excision restores lives.
Lastly, another hero of mine is Margaret Mead, a cultural anthropologist from the last century. She said:
“Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.”
Be that small group – nearly 180 million worldwide – that changes the world for women with endometriosis. Work with gynecologists everywhere to raise awareness of just how much this disease impacts lives and how inadequate many approaches are. Give them back their lives, their sexuality, their education track, their fertility, their love of life, get them up off the couch, and turn off the heating pads with truly effective surgical management of endometriosis.
It is time to stop ignoring the destructive impact this disease has on women’s lives, the lives of their families, spouses, significant others.
Actually, it’s way past time.”
© Nancy Petersen, RN 2013

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